Isabella Grace-ious

Isabella Grace
The story of the girl who changes my life

Tuesday, July 19, 2011


back*wards (adj.)

1. Directed or facing toward the back or rear
2. Done or arranged in a manner or order that is opposite to previous occurrence or normal use
3. Behind others in progress or development
4. Toward a worse or less advanced condition or state
(The American Heritage Dictionary of the English Language, 4th Edition)

We were at the checkout line at the grocery store on Sunday when a man I recognized as the store's greeter walked by our aisle. While I was paying, Isabella was sitting in the front of the cart, softly singing to herself. The man stopped at the end of our line and tried to say hello to Noah, who ignored him. I offered the man an apologetic smile, and started to turn away.

The man bent lower to Isabella and said to her "Hello young lady." She stopped singing, raised her head and looked at the man with curious eyes. The man looked back at her closely, and then spoke to her again.

"Ohhh. You're backwards, aren't you?"

My heart stopped for a beat. I looked at the man who was looking at me now. "What did you say to her?" I asked him.

"Is your daughter a bit backwards?"

I couldn't speak. I couldn't wrap my head around what he had just said, and for a moment, while I tried to digest that he meant what I though he had meant, I felt the lump in my throat that was restricting my speech threatening to never let me breath again.

I looked at Isabella, who was looking down at her hands and had resumed softly singing to herself. I looked back to the man again, and then turned away from him, and left the store with my family.

I should have educated him on the proper way to "greet" people. I should have enlightened him a bit on the world of special needs, and what is and isn't okay to say to people. But I was too stunned to react, and for that I am, in a way, grateful. Because I don't think I would have been very nice.

We live in a world designed for right handed people with only the smallest of concessions made for those who lead with the "wrong" hand. And when the left handed are seen struggling to find ease in the day to day rituals created to make life easier for the right handed, they are mocked, misunderstood, and not respected enough to allow for time to adjust to a world that is awkward for them, a world that defines different as wrong.

Although right handed, my baby lives
in a world that wasn't designed for her

Instead of forward progress toward finding universal respect and dignity for others who are different from us, this man's comments took us all backwards in time, and for a moment, I was standing alone in a packed grocery store, wondering how, despite hundreds of years of people sacrificing all they had for an ounce of respect, acceptance and love, one look into the eyes of an innocent and perfect soul could make a man, whose job it was to make people feel WELCOME, could instead isolate my daughter to an island named Different. A place where many forward facing people pray they never have to visit.

I don't think this man meant to hurt us. I don't think he was trying to make a four year old girl wonder if she was doing something wrong just for being who she is. His words alone made clear that he was out of touch with the current politically correct terminology. But to address Isabella like this, to let it be known that his first judgement of her was based on how she looked, and that someday someone else might say something like this to her and she will be old enough to internalize it all makes me sick inside. I know not all people are this way, and that speaks for itself in the 4 and a half years we have gone without uneducated comments like these. But one man's careless observation opened the curtains for me to see the scary and cruel future that Isabella could face, and once again, my world has changed.

Although I had thought that my acceptance of Isabella's syndrome allowed me to be rewarded with a body armor that would deflect life's cruel blows, and protect me from some of the pain that denial creates, this man taught me that instead of a solid shield, my bones of acceptance are more like ribs, designed to guard my vulnerability, but leaving empty spaces in between to allow for threatening stabs in the most tender parts of my being. No matter how educated, advocating, and forward we are, we are never exempt from the pain of rejection, disapproval, and not being understood. I guess I still have room in me where denial lives because part of the pain I had from this encounter was in realizing that she doesn't have an invisible disability, that the outside world can recognize it, and that no amount of therapy and intervention will ever completely cover up the disordered beauty that lives in her brain. And despite her rapid progress, as she ages it becomes more obvious: what was once looked at as sweet, cute, and quirky is now becoming peculiar, abnormal, and backwards.

At first, I was horribly offended by the terminology he used, but I decided to see how I could make sense of this once benign and now so ugly word. In some ways, Isabella is backwards, like a walking mirror, trying through observation to imitate things often times in an opposite manner of what comes naturally, just to keep others from noticing that she is on the other side of the glass.

When we are lost, sometimes going backwards is the quickest and most logical choice to find our way back home. By being "backwards", Isabella is always one step closer to the pure innocence she had when she was created.

In this maze of life, maybe we should all try going backwards to get to our destinations. Maybe it will slow us down enough to experience all that we are missing. And if it makes us half as happy as it makes Isabella, I'd say finding the meaning of life will happen somewhere along that backwards path.

And if backwards is wrong, I'd much rather be Isabella than be "right"


  1. You always make me cry. Partly from your eloquence, partly because I think I see Sophie's future in your daughter's present. I first saw you blog at about the time Sophie got diagnosed (I think around the time that you were first grappling with the potential of kabuki). And I wanted to contact you then, as the similarities between your daughter and mine overwhelmed me (even thought Sophie is much younger - just 22 months now). but I was far too weary to do anything about it. Since then you've responded to my intro on the Kabuki freeforum group (and I still haven't responded!) and I've seen some of your posts on facebook. Every time I've wished I had the energy to get in contact. Anyway, here I am. I read your blog in equal joy, fascination and fear. Hopeful at items with what I see Isabella is accomplishing. Fear at those time when I see that she is having ongoing issues, and how cruel the world can be. thank you for sharing your journey. You seem to be doing a fabulous job with your beautiful little girl.

  2. What a beautiful post and so sad that it was neccessary. Your words brought tears to my eyes and I'm so sorry that you and your gorgeous little family had to suffer for the ignorance of one man. I know how desperately you want to shield your children from hateful individuals, I feel exactly the same about my little Bee everytime someone startes in the street, or ignores her when she says 'hello'. You're doing a wonderful job. Cath xx

  3. I melted looking at those beautiful baby pictures below, aren't memories just grand!! my biggest fear is losing them with age someday, that's why I take pics and document EVERYTHING :) and make many family albums and blog a lot. Backwards huh?? sounds like something my grandmother would say, some ppl are just so uneducated when it comes to "developmental differences" no not disabilities. who made the rules on what's considered "normal" and not normal? we all know that developmental differences make our little beans unique and make them the little people we love and cherrish and have changed our lives for the better... forever! props to you, strong mama!!